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Patient Stories


Diva’s Story: Self Help for Self Healing!

Diva’s Story: The Beginning

Diva’s Story: To ring in the New Year four years ago, I fell off a horse. With all my other injuries, it took me a few days to notice that my left toe had gone just a little bit numb.

“So you can’t feel your toe?” “Not really, it’s more like I can kind of feel it but not completely.”

“And is there anything that triggers it?” “Not really, it seems like it just comes and goes.”

With answers like that, who could blame the ER doctors for not being able to figure it out? I was diagnosed with muscle swelling, put on muscle relaxants, and then sent to physical therapy (PT). PT, however, didn’t work out so well. I was in my sophomore year of college. I had just picked up a third minor. I was spending all the free time I didn’t have working on the school newspaper, helping out with admissions, and basically never sleeping. So the whole idea of lying on a yoga mat and spending 30 minutes a day doing exercises that hurt anyway was doomed to fail from the start.

College went on. My senior year, I enrolled in a program through which I could stay an extra year and get a master’s. Without my undergrad extracurriculars to occupy my time, I figured I might try going back to physical therapy, determined this time to actually follow through.

A few weeks in, though, my right thigh just went numb. It was the same weird kind of numbness. I could poke myself and still feel it, but it just felt like there was something covering my skin, even when there wasn’t. On my way back from dinner with some friends, I felt it spread — down my right leg and up my left until both my legs were the same strange kind of numb. Everyone was just as confused as they were concerned. They asked if I wanted to go to the ER, but I didn’t even know what I would say there. “I can kind of feel it but not completely?” I had already tried that one.

Diva’s Story: Searching for Answers

And so the testing began. My parents, all the way in India, grew increasingly frustrated about their inability to help me. Then came November 6, 2019. I had two midterms the next day and had (of course) left most of my studying till the very last minute. Incredibly stressed, I was staring at my notes, hoping my brain would absorb something, when I felt a searing, stabbing pain in my back.

Having just eaten not the freshest of Chipotle bowls and experiencing a type of pain I had never known before, I immediately grew nauseous and almost threw up twice. Every time I thought it was done, the pain would sear again and remind me it was still there. The ER was a two-minute walk away, so I just dropped my books and went. They took a spinal MRI, and nothing. It was odd, they concluded, but nothing seemed to indicate there was anything wrong with me.

The testing continued, with so many blood tests that I could find my own veins faster than most phlebotomists. Still nothing. Then the numbness spread to my shoulders. I had a neck MRI. Nothing again. My friends and I started making jokes about it. I laughed, glad we could make light of whatever was going on, but always in the back of my head was the constant voice asking: If no one can figure out what’s wrong with me, could this just be in my head?

We had already ruled out the possibility that the horse fall could have caused this — it was far too widespread for that. I saw a hematologist, a rheumatologist, a dermatologist. More blood tests. Around February 2020, the stabbing pains that had sent me to the ER in November became part of my everyday life. I’d be sitting in class sobbing from the pain, constantly worried that people were seeing me cry, and wondering what they thought of me. My friends were already flying around the country for job interviews, while I remained sitting on my couch still drowning in medical paperwork, not having applied to a single job yet. Then, finally, by July 2020, I was diagnosed with small fiber neuropathy (SFN).

Diva’s Story: The Diagnosis: SFN

Here’s the deal with SFN: the “funkiest” of the peripheral neuropathies. And yes, that was a term I heard used by an actual doctor. As the name implies, SFN affects the small nerve fibers, the ones that go out toward the skin. They don’t impact movement or muscle at all, so the prevalent way to diagnose SFN is through a skin biopsy, where they literally count how many nerve fibers show up in the sample. I had a tenth of the normal amount of fibers. That feeling I was having? Like something was covering my skin even though there was nothing? That was me not being able to feel the outermost layer of my skin. That was, bizarrely enough, the outermost layer of my skin feeling like something that doesn’t belong to me.

The stabbing pains started to become normal. The same level of pain that made me cry just a few months ago barely made me react at all. Deeper-than-usual cuts became normal. I’d bleed because I couldn’t feel my skin enough to know when it had been cut. Because I could barely tell if water was too hot, I’d burn myself. This all became normal. Like the entire world had to get used to the new normal of the COVID-19 pandemic, I had an added new normal to get used to — chronic pain, chronic numbness, and chronic weakness.

I accepted that I would never be able to learn how to drive, because during my first behind-the-wheel driving lesson, my feet couldn’t tell the difference between lightly pressing on the brakes and slamming on it. I accepted that my life had changed. And as my doctors concluded that my SFN was most likely genetic, I accepted that it would never change back.

Diva’s Story: The Start of Self Care

So I learned as much as I could. I asked my neurologist an endless series of questions, and I am so grateful that he took time out of his day to answer. I learned that inflammation was something that made neuropathy worse. The higher my inflammation was, the more likely my small nerve fibers would be to flare up and give me small electric shocks. Reducing that inflammation, then, became key. While waiting to hear back about jobs and figuring out what I was going to do with my life, I started taking back control and changing it myself, one day at a time.

I started eating healthier, exercising more, sleeping eight hours a day — all things that I knew I should have been doing all along but never really got around to. Before the SFN, there was always something else that was more important, always a bigger priority. Now, though, it’s: live a healthy lifestyle or be attacked by my own body.

Of course, I wish I didn’t have this condition at all. Of course I wish I had more positive reasons for making all these lifestyle changes. But regardless of the reasons, I made those changes. For the first time in my life, I prioritized my health. And the numbers agreed with me. Within six months, I saw my inflammation go down by over a 100. I saw my pain reduce.

During those six months, I started my first job. I started tutoring and working with kids over the weekend. I started volunteering at a company working toward a cure for neuropathy. I started cooking every meal.

The Road to Self Healing

Diva’s Story: Don’t get me wrong, I still have a long way to go. But if there’s anything this year has shown me, it’s that I don’t have to do it alone. My parents spent hours researching SFN and inflammation and figuring out what I could eat to reduce my pain. When I had to start using hiking poles for balance while going on walks, my friend would go with me so I wouldn’t feel as self-conscious. Another friend researched workouts I could do despite my reduced hand strength. My college roommates worked the idea of me in a wheelchair seamlessly into the 2022 Disney trip we’d been planning.

Slowly, I learned to laugh about the pain and the numbness. When the world goes back to normal, I won’t. And that’s been hard to come to terms with. But as long as I can laugh about it, and as long as I have people to laugh about it with, I’ll be okay.

For more information about living a healthy lifestyle with peripheral neuropathy, click here.

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